30 Days of PF: Taking My Time to Reveal My Diagnosis

Photo courtesy of Jofac O’Handlin

Day 24 of 30

This is Jofac O’Handlin’s story:

My story begins when my wife and I each suffered a bout of pneumonia in February 2013. When it came to recovery, Susan came out of it much sooner than I did, and the X-rays showed the damage to my lungs was significantly greater than it was to hers.

Prior to that, I was a fairly fit 71-year-old going out twice a week with my training partner of some 30 years, running about seven or eight miles on each occasion. Following pneumonia, I tried to get back to our regular training sessions, but it was proving hard. I was struggling after about half a mile.

That led to a follow-up scan of my lungs and a preliminary diagnosis, in August 2013, of IPF. The doctor’s bedside manner left something to be desired, with a blunt remark that there was no treatment for the condition. It was not until I looked online that I understood that IPF was untreatable and fatal.

With that understanding, I made the decision to NOT tell my family whilst my symptoms were minimal.

In December 2014, I had a lung biopsy. That was difficult to disguise, but I got away with it. Since I was, apart from the IPF, a fit and healthy individual, I was offered Ofev (nintedanib) in April 2015 on a “compassionate basis.” At that time, it had not been approved by the NHS as a free prescription.

It was during 2014 that my sister Shelagh also was diagnosed with IPF. I was still maintaining “radio silence,” but I tried to guide her toward NHS specialists without revealing my own condition. Hers was very obvious, with a barking cough. Shelagh was to survive less than two years from diagnosis, until just one week following her 85th birthday.

In July 2019, I gave up my training runs. It was OK to run downhill, but sheer hell to go uphill, and my training partner had to be told. In the same month, following a holiday in the Yorkshire Dales, I had to tell my family. They had received the benefit of six years of blissful ignorance.

In five months, I hope to make it to 80, still five years short of my sister’s age when she died. I hope to arrange my 80th party and to celebrate 50 years of marriage. Until then, I’m going for a walk.

Pulmonary Fibrosis News’ 30 Days of PF campaign will publish one story per day for PF Awareness Month in September. Follow us on Facebook and Instagram for more stories like this, using the hashtag #30DaysofPF, or read the full series.